With more than two million page views and more than 4,500 items, this blog provides news and commentary on public policy, business and economic issues related to the $3 billion California stem cell agency, officially known as the California Institute for Regenerative Medicine(CIRM). David Jensen, a retired California newsman, has published this blog since January 2005. His email address is djensen@californiastemcellreport.com.

Below is a copy of the article, which appeared on the main page of
The Bee Web site early today and which was written by yours truly. In
the print version of The Bee, the Knoepfler piece appeared on the
same page as a New York Times story dealing with dubious stem cell
treatments(Here is a link to the original version of the Times'
piece.).

The Knoepfler story was also the No. 1 article that turned up this
afternoon when the Google news category was searched using the term
“stem cell.” It is likely to be published elsewhere in the coming
weeks as it is circulated by the McClatchy News Service.

By
David Jensen

Bee
correspondent

PUBLISHED
SUNDAY, SEP. 15, 2013

In
his day job, UC Davis scientist Paul Knoepfler probes the inner
workings of stem cells and cancer cells and what makes them behave
the way they do.

On
the side, the father of three daughters blogs about costly, unproven
stem cell treatments and provides guidance for those seeking
experimental therapies.

Knoepfler
is a rare stem cell researcher who regularly explores the most
problematic aspects of stem cell therapies on the Internet in full
public gaze. He considers himself an advocate for patients as well
as a scientist, having survived an aggressive form of prostate
cancer at the age of 42.

Now
46, Knoepfler began his blog in 2010, shortly after his cancer was
diagnosed. His blogging has encountered resistance from some
colleagues, who are uncomfortable with such public endeavors. But he
has polished and expanded the blog to the point that it has received
international recognition. He will receive an award in December at
the World Stem Cell Summit in San Diego for his advocacy efforts.

This
month he moved beyond cyberspace and published “Stem Cells: An
Insider’s Guide” (World Scientific Publishing). The book covers
stem cells from A to Z and is aimed at the general reader,
especially people considering stem cell therapy for themselves, a
family member or friend.

The
book comes during what has been described by Christopher Scott, a
senior research scholar at Stanford University, as “an epidemic of
transplant clinics offering so-called cures and therapies” both
here and abroad. The international stem cell medical tourism
business, widely promoted on the Internet, is taking in roughly $1
billion annually, according to an estimate in Stanford Medicine, a
publication of the Stanford medical school.

Knoepfler
is a believer in the potential and power of stem cells. But he says
that some of the dubious stem cell treatments now being offered have
resulted in deaths and injuries. Other unpleasant issues arise as
well in stem cell research, including the tendency of some stem
cells to generate cancer cells, and Knoepfler wants to talk about
them.

“Too
often in the academic section of the stem cell field, people
pussyfoot around the most important issues or do not even dare talk
about them at all,” says Knoepfler.

He
is “not on some crusade to dissuade people from getting risky stem
cell procedures,” but says safety and training need to be
encouraged. Reckless behavior endangers the entire field, he says.

“There
is no better illustration of the risks of unlicensed stem cell
treatments administered by untrained doctors than the recently
reported case of a woman who received a stem cell facelift, only to
have bone grow in her eye,” he said, referring to a Scientific
American report involving a Beverly Hills clinic.

To
help patients, Knoepfler’s book begins with the basics: What are
stem cells? He moves on to topics ranging from whether stem cells
can treat baldness to whether they can help with afflictions such as
Alzheimer’s, autism and arthritis. Along the way, he discusses the
potential for regenerating limbs, made-to-order organ transplants
and curing spinal paralysis, none of which have reached the stage
where patients can be assured of using the techniques safely and
effectively.

Stem
cell treatments are not exactly new. They were first used in the
1950s in bone marrow transplants. More recently, what has excited
researchers and the public are pluripotent stem cells, which have
the ability to transform themselves into any part of the body. The
full range of stem cells, however, includes adult, fetal, embryonic
and induced pluripotent cells (iPS), which are also known as
reprogrammed adult stem cells.

“Each
type of stem cell has clinical promise for specific diseases, but
also certain weaknesses. Some stem cells also stir controversy. For
example, embryonic stem cells have been at the center of ethical
debates for more than a dozen years,” Knoepfler writes.

Embryonic
stem cells are derived from an embryo only a few days after
fertilization and require destruction of the embryo. It was that
type of process that triggered the federal restrictions – now
rescinded by President Barack Obama – on federal funding of
research using human embryonic stem cells. Some people believe that
the process amounts to killing a human being, while others do not.

Knoepfler
has come up with a battery of questions and “rights” that
persons considering a stem cell treatment should address as they
contemplate spending tens of thousands of dollars for treatments.

His
“patient bill of rights” includes the right to treatment by a
trained provider, the right to continuing follow-up and the right
not to be charged to participate in a clinical trial.

Just
this month, he added on his blog, ipscell.com, the top 10 questions
that patients should ask. They include such areas as the details of
the methods to be used and costs, the cell numbers and types,
regulatory compliance by the provider, data supporting the cellular
product’s effectiveness and data supporting its safety.

As
for mainstream media reports and research papers that seem to
promise miraculous cures, Knoepler says, “My advice to patients is
to be cautious when reading papers on the clinical use of stem
cells. Do not believe everything you read and avoid placing too much
weight on any one paper. If something is real, it should be
reproducible by multiple groups.”

One
of the areas of Knoepfler’s research involves cancer stem cells, a
topic of special interest to him because of his own encounter with
the disease. “Even with something as wonderful as stem cells,
there also can too much of a good thing. Stem cells can cause cancer
and in certain conditions they can make cancer especially hard to
cure,” he explains.

In
the case of embryonic stem cells, he cites their ability to form an
unusual tumor called a teratoma. Knoepfler, who was an English
literature major as an undergraduate, says, “The name ‘teratoma‘
literally means ‘monster tumor,’ and there is good reason for
that nomenclature. These tumors look monstrous when observed by eye,
akin to an animal put into a developmental blender.”

Knoepfler
did not use stem cell therapy to treat his cancer, but he says that
as a cancer survivor he understands all too well why patients turn
to it when they’re dealing with a life-threatening or
life-changing medical condition.

“If
you feel that your disease has put you in a place for which patience
is not an option,” he says, “talk with your physician. Get
second and maybe even third and fourth opinions before deciding
whether or not to proceed.”

Knoepfler’s
advice may not be appreciated by some of the firms he writes about,
but others think well of him.

Jonathan
Thomas, chairman of the $3 billion California stem cell agency, says
the field needs more scientists like Knoepfler.

“It's
hard to overstate the value of what Paul does,” Thomas said in an
email.“Paul
is a powerful advocate for helping the public understand what
research is being done, and why it is important. He is gifted at
taking complex science and turning it into plain English so that
anyone can understand what he's talking about.”

Knoepfler
has received $2.2 million from the stem cell agency for his
research, which is also funded by the federal government and other
sources. He has been at UC Davis since 2006, part of the campus’
stem cell program, which has received $131 million in grants from
the state stem cell agency since 2005, generating 333
research-related jobs.

Knoepfler,
whose father was a physician and mother a counselor, sees a bright
future for stem cells, indeed a “medical revolution.”

“Stem
cells are today’s new frontier of medicine that will no doubt have
an unimaginable impact on our lives, but even more so on the lives
of many of our kids and grandchildren,” he said.

Jensen
is a retired Sacramento Bee journalist and has produced the
California Stem Cell Report (californiastemcellreport.blogspot.com)
on the Internet since 2005, writing nearly 3,600 items.

About Me

The California Stem Cell Report is the only nongovernmental website devoted solely to the $3 billion California stem cell agency. The report is published by David Jensen, who worked for 22 years for The Sacramento Bee in a variety of editing positions, including executive business editor and special projects editor. He was the primary editor on the 1992 Pulitzer Prize-winning series, "The Monkey Wars" by Deborah Blum, which dealt with opposition to research on primates. Jensen served as a press aide in the 1974 campaign and first administration of Gov. Jerry Brown. (Time served: two years and one week.) He writes from his sailboat on the west coast of Mexico with occasional visits to land. Jensen began writing about the stem cell agency in 2005, noting that it is an unprecedented effort that uniquely combines big science, big business, big academia, big politics, religion, ethics and morality as well as life and death. The California Stem Cell Report has been identified as one of the best stem cell sites on the Internet. Its readership includes the media (both mainstream and science), a wide range of academic/research institutions globally, the NIH and California policy makers.